Sunday, August 30, 2015

I had a lovely brunch yesterday with my friend Bev Bloomberg at Jake's in Northampton, where I reminisced about how Jim and I, when living in Florence, used to bring our newspapers down there.

When the conversation turned to seemingly bad events that had led to positive outcomes, I realized I had a new medical adventure that was turning out differently than I expected, namely the ECP, or photopheresis to treat my graft vs. host of the skin.

I was dismayed when I learned in May that I had to do this for two consecutive days for three hours at a time for 12 weeks and then one day a week for another three months (where I am now) and then after that with decreasing frequency.

But in addition to improving my overall movement and my tennis game, it has led to meeting a new group of warm, funny, caring nurses and another great doctor, William Savage, medical director of the Kraft Family Blood Donor Center. He is so easy-going and friendly. The first time I was in there I was squirming in my chair with that big needle in my arm and couldn't believe I could last for three hours, but he said, "Just make yourself as bored as you can get, and the time will pass."

Actually (except for the matter of the big needle and keeping my arm straight), I can now say, although it is hard to believe, that it is pleasant to be there. The nurses fuss around, arranging your pillows, bringing a warm blanket, joking and sharing their stories. I mostly read the New York Times on my computer, or watch a little something on Netflix, or read a bit of a New Yorker or a few pages of a book. It's hard to turn pages with one hand. Most often, I fall asleep.

Dr. Savage is especially interested in the changes in my tennis game. First thing he says when he walks by is, "How is your tennis game"? I'm the only tennis player who has passed through there. I said maybe they'll do a study on me. I also told him that I'm moving better in yoga because my skin is less tight.

The other things that came up with Bev were:

#1 Bad thing: losing 12 teeth due to being immunosupressed for so long, with the positive outcome of one of the surgeons seeing a suspicious spot on my tongue and that spot turning out to be precancerous cells. I'm not saying it was fun to have a piece of my tongue scooped out – it hurt like hell for a long time afterwards – but that was the end of it, and I was saved from a worse outcome. I thought about this when beautiful Ann Gregory survived a blood cancer and a bone marrow transplant but succumbed to a squamous cell cancer that started undetected on her tongue.

#2 Bad thing: missing my cousin Nancy's 60th birthday bash in California due to double pneumonia that landed me at Brigham and Women's Hospital instead of on a plane going west. Positive outcome: a scan to find out the extent of the pneumonia led to the discovery of a small kidney lesion (euphemism for cancer) that otherwise would have gone undetected and most likely led to full-blown kidney cancer. A surgeon was able to remove a small section of my kidney. Not that it was fun to have that kidney resection surgery on Katie's birthday two years ago – and again, I remember standing in my kitchen crying hysterically because the pain medicine wasn't working and the doctor's office hadn't returned my calls – but now all I have is the scar and the memory of another narrow escape.

As I write this I can hardly believe this all happened to me.

But it did, and I just want to say, you just never know how things will turn out.

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About Me

On Jan. 31, 2009, I had a rare fourth bone marrow transplant. This is my story of running into a diagnosis of Acute Myeloid Leukemia, or AML, in 2003 after feeling unusually winded while running a 10K race. It is a story of falling down and getting up and falling down and getting up many times over, with two relapses, life-threatening complications, life-long side effects... and a determination to keep moving. I am a freelance writer with a background in daily journalism. I have three children, one Labrador retriever and a debt of gratitude to my bone marrow donor. I have written versions of the story for The New York Times, The Philadelphia Inquirer, Espn.com, Marie Claire and Vice Media. I started the blog in 2008 with one story and found that I had many more to tell.